[daniella]

Hi. I'm from MI living here in Ventura. I have seen a few docs here after many in MI/OH. In the whole most of my testing is done but need to find more help in pain control and actually looking more into the dx of why my pain is so great compared to results. Anyhow the last pain doc at UCLA wanted the spinal stimulator and would not try any other meds or shots cause he said I need more long term. When I had talked to my neuro she had said maybe the fentnyl patch would work but wanted me to work with the pain doc for meds. He said no cause I need something for long term and nothing else but the stimulator will last. That I have tried most of the meds and the shots would not bring long enough. I have tried cymbalta which is current,elavil,lyrica,neurontin,tramadol and was on vicadin but not for 4 months with not good results. Oh and the lidocaine patch. I really want to try less invasive then the stimulator or the catheter which the cleveland doc wanted but the ucla said that wan't enough either. It seems the pain docs want to only do big procedures. My gp is horrible which I switched to from another crappy one. I know some of your gp do your meds so was thinking of finding a new one. I have sent my record out of state again to a specialist but really want to find help here. So if anyone has some good doc they work with in sountern ca. I live in Ventura but will drive for a good one or a way to find a better one. I get referrals from other docs always but I would rather now since those have been less then great and are suppose to be the best what ever that means I would like to try one from a patient referral if that makes sense. Ok thank you.

[dahlek]

But I guess IF you PM Shelley, Kmeb and Wings42 [aka David] they mite be able to help....

I have to say tho....Don't ya hate it when each doc passes off responsibility [so to speak] to another, and they never actually communicate. Doesn't it make you feel as if you are one true HOT POTATO that they simply want to pass on? Does wonders to your ego doesn't it? Do not ever take that personally - i would take it as a sign of either a doc who's taken too much on, or one who doesn't really care...as in Not Curious. I prefer my docs to BE Curious... Thing is not to be a 'doormat' and allow them to do it [the passing off stuff] make another appointment and really challenge them. Try to make it clear that there must have been something said and not REcIEVED during your prior appointments that isn't getting US [you and doc] anywhere near what you expected for 'someone of their calibre'. Ego/complements [tho indirect] can be a far better carrots than a big stick. Something I suspect you want to use. Sometimes it works, others it can backfire...you just have to 'feel' your way thru that doc on THAT day and try to get a point of three across.

Wish I could be more useful. There really have to be more GOOD GUYS out there? Do they all go down a black hole or something? Hugs for the duration! - j

[BEGLET]

Hi Daniella,

Taking into consideration where you live - I'd go to UCLA, St. Johns, or Cedars (which is gonna be a drive getting into mid-city) 'cause there is really no freeway to get there directly by... out my way there's really no-one outstanding in that area that I know of - but out in Calabasas-Thousand Oaks area there may be - I can do some asking around (that wouldnt be too bad of a drive)....

Can you see a different doc at UCLA for a "second opinion"? That might give you a different perspective.....

[daniella]

Thanks I really appreciate it if you would ask or hear of someone. I will also try to pm those people. I am willing to drive. I mean I drove 4 hours to OH when in MI each way. For a good doc I would fly to Japan. I think that getting a 2nd opinion at Ucla will not work since I saw the director of the pain clinic. I was thinking that maybe instead of more pain clinics right now to find a good gp who may look deeper into more meds for the legs pain but also look more into the breathing and out of it. I had went to a new gp in June who I hoped would do that but just gave me nose spray and then I went to the Cleveland and Clinic. I have no clue where the good docs are. I felt place lke Cleveland and Ucla would be great but felt very rushed and let down. The ucla doc said I would never get better or relief unless the stimulator and also really stressed a psychiatrist. I felt and usually my mom comes but since I moved here I went on my own but because of my age and background he really did not treat me in a proper way.The Cleveland one though seemed to think oneday I would be able to run which I wil never try but the option would be nice.I have yet to come out of these apts feeling better. The docs either make my pain worse by touching me when I say not to or I have to fight with them not to or they make my mental outlook worse.I am doing more from where I came from of all day in bed. I take 20 minute walks and am out of bed full days but still my pain is very high,the out of it and chest is scary,and the leg pain has spread to both legs. Sorry for my rant. I know you all have been through similar. I'm just hoping for angel doc soon.

[MelodyL]

H there.

My husband's Alan, pain was so bad that they put in on the Duragesic Fenanyl pain patch 5 years ago. He started with the 25 patch (changed every three days), and in a few months he went to every two days, and then in a few months he gradually went higher. He was on the fentanyl patch for about 2 and a half years. He went all the way up to 125 (every three days,) that's how intense his pain was, with Vicodin for breakthrough pain. He went to the hospital, to their Pain Management clinic and he had to sign a contract and everything.

The side effects were horrible constipation and he did take laxatives, but I will never forget how it took his pain away. He went to work, drove his car and everything. How he did this I'll never know.

But years have passed, he saw a chiropractor neurologist who took care of his body and Alan went to his GP, who weaned him (slowly) off the patch.

Today, he takes no pain meds whatsoever. He has ultimately been diagnosed with CIDP, Chronic Inflammatory Demylinating Polyneuropathy. And he does IVIG once a month. He says his pain (between certain toes), His feet are completely numb by the way), he says his pain level is much more tolerable now.

I just wanted to give you HIS experience with the Fentanyl patch.

Good Luck to you.

Melody

[daniella]

Thanks Melody. I think from what the ucla doc said the reason no on that patch is because I will need something long term and that is not good for other issues in the body. WHen I was taking vicadin which i know is hard on the liver they really pushed me off of it regardless of pain level. I had a pretty easy time though stopping cause even when I took it my pain was high. So it has been over 4 months without it. I don't want other problems in life as I have enough. I do know some of the med issue I feel is because of my age cause the docs often say because your young I don't want to give you A for example. I understand that but would like to make it to be older at the same time don't want more problems in my 30's,40's so on. Thanks for your input.

[DanP]

Here is my experience with the Fentanyl Patch. I've had painful idiopathic sensory PN for almost 21 years. The Neruros and others prescibed the anti-seizure drugs like Neurontin and Topomax and many other meds but I never got relief from any of them and I've even tried the newest: Lyrica. So, my Internist asked me about 5 years ago if I had ever been RXed the Duragesic Patch and when I said no he suggested we give it a try. So, I started at the 50 strength but it was not strong enough so we went to 75 strength and on to the 100 strength patch and BINGO!!! The 7 to 9+ level pain I had all those years almost overnight went down to a 2 to 4! Such relief was unbelievable after those earlier years! Sometime during 2006 I noticed the patches were not lasting the full 72 hours so we began changing them every 2 days and the same relief resumed. At the beginning of Mar 07 I noted the pain was increasing again so we added a 25 strength patch bringing the total stregth to 125mcg/h and immediately the pain was again under control. I have become so accustomed to the 2 - 4 pain that I hardly notice it any more.

I do have constipation because the medication is a narcotic but this too is controlled by a combo of stool softner and mild laxative so it's not a problem.

I am now 75½ years old, able to function normally for a person of that age. My eyes are clear, hands are steady, and I drive my car everywhere - literally from one end of the country to the other and all without incident. With my trusty cane and dog I walk 1 - 2 miles most every morning. If it becomes necessary I am prepared to go to 150, 175 or whatever strengths it may take. This med doesn't make me 'high' or zonked out or any other side effect beyond constipation....all I get is blessed pain relief! At my age it's more than likely I will outlive the need for much more increases in the strength of the Fentanyl Patches (the generic form of the Duragesic Patch).

Well, that's my story and I'm sticking to it.

Dan

[DanP]

Here is my experience with the Fentanyl Patch. I've had painful idiopathic sensory PN for almost 21 years. The Neruros and others prescibed the anti-seizure drugs like Neurontin and Topomax and many other meds but I never got relief from any of them and I've even tried the newest: Lyrica. So, my Internist asked me about 5 years ago if I had ever been RXed the Duragesic Patch and when I said no he suggested we give it a try. So, I started at the 50 strength but it was not strong enough so we went to 75 strength and on to the 100 strength patch and BINGO!!! The 7 to 9+ level pain I had all those years almost overnight went down to a 2 to 4! Such relief was unbelievable after those earlier years! Sometime during 2006 I noticed the patches were not lasting the full 72 hours so we began changing them every 2 days and the same relief resumed. At the beginning of Mar 07 I noted the pain was increasing again so we added a 25 strength patch bringing the total stregth to 125mcg/h and immediately the pain was again under control. I have become so accustomed to the 2 - 4 pain that I hardly notice it any more.

I do have constipation because the medication is a narcotic but this too is controlled by a combo of stool softner and mild laxative so it's not a problem.

I am now 75½ years old, able to function normally for a person of that age. My eyes are clear, hands are steady, and I drive my car everywhere - literally from one end of the country to the other and all without incident. With my trusty cane and dog I walk 1 - 2 miles most every morning. If it becomes necessary I am prepared to go to 150, 175 or whatever strengths it may take. This med doesn't make me 'high' or zonked out or any other side effect beyond constipation....all I get is blessed pain relief! At my age it's more than likely I will outlive the need for much more increases in the strength of the Fentanyl Patches (the generic form of the Duragesic Patch).

Well, that's my story and I'm sticking to it.

[daniella]

DanP I'm just like you in non of the meds like lyrica so on give me relief. That is why I asked my neuro about the patch and she said it was maybe an option but to go to the pain doc. So I went and he said no cause I need long term so only the stimulator. I meant to ask why the patch couldn't be long term. Is it because it is a narcotic? Also maybe cause my age? I'm so happy you found what works for you. Your an inspiration cause most people your age without pn would not do all you do. You deserve a lot of credit.